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Can't get good results!

Diafreakies

Diafreakies

Member
Messages
7
Type of diabetes
Type 1
Treatment type
Pump
I'm 22 and I have been type 1 for almost four years now and I have tried my absolute hardest to get good results and it is impossible! The lowest my Hba1C has been is 8.0 and now it's back up to 9.1. I have FINALLY been given a pump after constantly having night hypos and being high during the day. I thought this would be the answer to my problems but apparently not. My ratios change ALL the time, literally every 2-3 weeks and I feel I haven't been taken very seriously since being diagnosed. Every time I go to a clinic it's a different doctor who doesn't seem to believe me when I say I can't get my ratios right and have always told me its 'due to my age' because I have 'no routine'. However, I have had a routine since finishing uni last year and nothing has changed. Four years of this and I have finally been told it may be due to my hormones and monthly cycle. However, after being told this i've been made no follow up appointment and honestly can't see a pattern that links it to hormones. I just feel at a complete loss and as if i'm being left to it! I don't understand how anyone can have good results.

I guess my question is, has anyone experienced the same thing? I have done Dafne so I follow the carb ratio rules but my ratios don't stay the same for long which makes it almost impossible to ever have a good levels and I definitely don't see how I can ever have a good Hba1c! Is it supposed to work out so your ratios and background insulin - once worked out - stay the same all the time? Because that is something I can only dream of! I'm so tired of constantly having to work it out every week.

Any words of support and advice would be great and sorry for the big essay!
 
Last edited by a moderator:
Hiya, my basal pattern changes all the time, so all I do is test test and test so I can see where the changes are.
I'm lucky in that I have a cgm now so life is a lot easier for me.
Do you have the book pumping insulin by John Walsh? If not buy it as it will be the best investment you will ever make. Pumping insulin is also known as the pumpers bible :)
 
Hi. I can't help with pump management mysefl but one question is whether your BMI is a bit high and what your diet is? I'm only guessing but sometimes insulin management can be more difficult if there is excess weight due to insulin resistance.
 
First off:
1) are you sure its your ratios that are wrong?
From my experience its my basals that need altering more than ratios.

2) are your basal and bolus totals working out to be about 50/50?

3) are you basal testing?

4) what are your night time levels running at?

5) are you going high or low specifically 2-3 hours after a meal?
 
Thank you for all the answers! I will look up the book and read through the link! My BMI is about 0.5-1 above normal so i'm not necessarily overweight but I know I could do with eating healthier and doing more exercise! I hadn't really taken that into account, thank you! However, even my nurse has said with the erratic levels i'm having she can see why I cant focus on exercise right now which is something I am desperate to do but can't seam to even get to the point of good levels to then adjust it for the gym etc.

Donnellys Dogs, I think most of my problem must be that my basel is wrong and maybe not my ratios? But its confusing because I can have a few days straight where my levels are in range and then it changes again, which when I change my ratio's its goes well again and continues in a cycle. My bolus/basel ratios are almost 50/50 exactly every day, would it make a difference if not? I am basel testing over night at the minute as I can go to sleep with levels of 13 and wake at 6, which drops between 6-10am so i'm currently trying to fix that. I don't seem to be going low after meals though, but high at night after dinner so my initial thought would be to change my ratios, would that suggest it was my basel though?

Thanks!
 
Have you tried keeping a meticulously recorded diary? Recording BG results before each meal, two hours after and before bed. Noting down how many carbs you have eaten, the amount you injected for that meal, whether you adjusted your dose for a high or low premeal reading. Noting down correction doses or the amount of carbs you have for a hypo fix. Noting down anything that could have impacted your sugars for the day (sleeping in, walking somewhere, bigger than normal meal, period). Also might be worth noting down what week of your monthlies that you are on. This doesn't have to be constant through your life but just until you're stable.

I was similar to you, HbA1c of 8% to 9.4% for four years. I went into DKA last year and finally decided to try take control by measuring everything I ate. Moved away from uni and to my home town and so had a new diabetic nurse at the GP, my HbA1C was 9.1% in September despite me thinking I was injecting the right amounts. She kicked my butt right into gear, had me write down everything and in december I got to 6.4%. My basal came down from 30units to 18units. Visually seeing where I was highs and lows helped a lot for me.
 
That's exactly what I need! I have no problem with my motivation, I have never tried so hard to get something right in my life, but I am completely failing! Thanks for the idea, keeping a diary with all of that in would be a good idea I think! I just wish that my nurses were more involved. I moved to another Uni a year after I was diagnosed and now the care I get is not good compared to how great it was before! I know I can't blame them for my problems, but I was literally given this pump and sent off with it with barely any information! The first hospital I was at saw me every week, now I'm lucky if I can get an appointment once a month!

Do you find your basel rates change frequently still? Or does everything stay pretty similar now that you've got it more under control?
 
Diafreakies said:
That's exactly what I need! I have no problem with my motivation, I have never tried so hard to get something right in my life, but I am completely failing! Thanks for the idea, keeping a diary with all of that in would be a good idea I think! I just wish that my nurses were more involved. I moved to another Uni a year after I was diagnosed and now the care I get is not good compared to how great it was before! I know I can't blame them for my problems, but I was literally given this pump and sent off with it with barely any information! The first hospital I was at saw me every week, now I'm lucky if I can get an appointment once a month!

Do you find your basel rates change frequently still? Or does everything stay pretty similar now that you've got it more under control?
Click to expand...

Like you, I was seen at a diabetic clinic for a initially, they were amazing there. Moved to uni which was then a year and a half after diagnosis and had a GP who specialized in diabetes instead, she was amazing but I think it was a lack of daily routine in university that meant I wasn't fully under control. For me I find my sleep affects my sugars a a lot and I was stating up late, sleeping in, havin naps etc. Third year was so stressful and I didn't fully understand the extent to which that can raise my blood sugars which is why I ended up in DKA. When I moved home I had another great GP diabetic nurse but now I have moved to a new city and I'm praying that I have someone of the same calibre. I think it's appalling that you haven't had the correct support with your pump! Do you go to a GP or a hospital clinic?

When I saw my latest diabetic nurse, after keeping my diary for a week we noticed I was often having nightime hypos and morning hypos. We started reducing my lantus by a couple units, I would rerecord my diary for the next two weeks then we would meet up again and look at the changes to hypo rate and see if it needed to be brought down again. My basal has been completely stable since I found the dose I needed in December and only my bolus needs adjusting. I am on injections though and have no idea how a pump works so I am not sure if your basals changing is normal or not- sorry!
 
If you are high of low specifically within 2-3 hours after a bolus..then that is what needs altering.

When you are having a high or low at say 8pm when you have ate say at 5.10pm. You ought really to consider what exercise or activity or carbcounting you have done as the first step.
Then it would be your bolus to consider
Then it would be basal to consider after basal testing. If you went low or high at 8.30pm then I would be considering basal only.
This only saves me basal testing after meals.

You should always try to leave 5 hours between meals and see how your bolus with your basal pans out. At least thats what my consultant told me.

If you see a pattern for your monthly cycle then you can set up a different profile to cope with that.

You must do a night basal test or a few. I do 2 once in a while only. I do 12,2,4 and 6amone day and the next 3,5 and 7am. Change and then just do a bedtime and 3am and 5am when I get up.

Depending on the pump you use.. Somemanufacturers like accuchek do good diary log books free of charge you just have to ask them to send you say six.

Pumps do need more testing and changing than MDI. Probably as the insulin only last 5 hours that things alter so much..
 
Hi, I have had diabetes since I was 9 and have been battling with the same problem for years! I am now 25 and only just getting back on the normal scale of Hba1c readings..well the most normal I've been since being diagnosed..after years of nurses etc telling me I was an adolescent diabetic and practically gave up on me ( I can own up to a point I wasn't looking after myself) there is a few reasons to that..but any way after years of being told I am killing myself due to poor control, and doing Dafne twice..I've come to realise it is only you that can make a change..I have discovered that about a week or 2 before my period my readings will go higher and I have to adjust doses accordingly, also I get dawn phenominon, which is when you wake up in the morning your body shoots out glucose..every morning from 6am-8am I have to get up and give a correction dose of 2-3 units which does the trick..it sounds like you may have a touch of both...when do you notice that your sugars are high? is it morning afternoon or evening?
 
Emily2369 said:
Hi, I have had diabetes since I was 9 and have been battling with the same problem for years! I am now 25 and only just getting back on the normal scale of Hba1c readings..well the most normal I've been since being diagnosed..after years of nurses etc telling me I was an adolescent diabetic and practically gave up on me ( I can own up to a point I wasn't looking after myself) there is a few reasons to that..but any way after years of being told I am killing myself due to poor control, and doing Dafne twice..I've come to realise it is only you that can make a change..I have discovered that about a week or 2 before my period my readings will go higher and I have to adjust doses accordingly, also I get dawn phenominon, which is when you wake up in the morning your body shoots out glucose..every morning from 6am-8am I have to get up and give a correction dose of 2-3 units which does the trick..it sounds like you may have a touch of both...when do you notice that your sugars are high? is it morning afternoon or evening?
Click to expand...

Totally agree... I don't have monthlys as such due to hysterectomy but certainly being a person that experiences DP and a hubby that works shifts etc... Then there will be times when you need a different profile.

I use a different profile for hubbies AM or PM shifts or lie ins. I've tested regularly for these during the night as these are the biggest times of changes with me.

You do have to esrablish the timeswhenyour body needs a different basal profile...I suspect it is your nights more than anything that are giving you problems.

Then you need to do a basal test for evening time...

Or at least, thats what I would do.

Don't get fed up with pump changes... It is more work than MDI perhaps.. But you can get better results. Time spent initially will be rewarded later...

Just can you answer if you had a 5am rise 2 hours after a 3am good reading what basal rate(s) would you change for that?
 
What sort of foods are you eating and how many carbs per meal? Do you weigh foods and use my fitness pal or similar to help you count the carbs?

Ali
 
Diafreakies said:
I am basel testing over night at the minute as I can go to sleep with levels of 13 and wake at 6, which drops between 6-10am so i'm currently trying to fix that. I don't seem to be going low after meals though, but high at night after dinner so my initial thought would be to change my ratios, would that suggest it was my basel though
Click to expand...

That is one big drop in bg levels. On a pump you can have multiple basal rates and can even have 2-3 running during the night if it keeps bg levels stable, at the moment I have two rates which keeps me steady throughout the night, by rights if your basal rates are correct then your bg shouldn't fluctuate by more than 1.7mmol.

The link provided earlier explains how you should do basal checks in different time frames throughout a 24 hour period, have a good read of it and see if its helpful.
 
Diafreakies said:
That's exactly what I need! I have no problem with my motivation, I have never tried so hard to get something right in my life, but I am completely failing! Thanks for the idea, keeping a diary with all of that in would be a good idea I think! I just wish that my nurses were more involved. I moved to another Uni a year after I was diagnosed and now the care I get is not good compared to how great it was before! I know I can't blame them for my problems, but I was literally given this pump and sent off with it with barely any information! The first hospital I was at saw me every week, now I'm lucky if I can get an appointment once a month!

Do you find your basel rates change frequently still? Or does everything stay pretty similar now that you've got it more under control?
Click to expand...

I was really **** at recording everything till it finally dawned on me to use an app because it's so much easier than carrying round some silly little notebook and pencil or trying to remember everything later. I mean these days who doesn't have their phone to hand all the time? Especially in your age group. I use Diaconnect (it's not good for recording basal rate changes but if I make a change I write it in the Notes section). I find it incredibly motivating. And for the first time in my life I have 600 readings to show my endo. He's going to faint, poor man!

I've had my pump for four months. My HB has dropped from 9 to just under 7. Now I am focusing on getting less deviation in my BG levels - I'm flattening out the roller coaster, I hope. The first two months were a bit tough. But still, quite thrilling, because I could see cause and effect more clearly than with MDIs (I think my injection sites are shot!)
 
Emmaayziing said:
Like you, I was seen at a diabetic clinic for a initially, they were amazing there. Moved to uni which was then a year and a half after diagnosis and had a GP who specialized in diabetes instead, she was amazing but I think it was a lack of daily routine in university that meant I wasn't fully under control. For me I find my sleep affects my sugars a a lot and I was stating up late, sleeping in, havin naps etc. Third year was so stressful and I didn't fully understand the extent to which that can raise my blood sugars which is why I ended up in DKA. When I moved home I had another great GP diabetic nurse but now I have moved to a new city and I'm praying that I have someone of the same calibre. I think it's appalling that you haven't had the correct support with your pump! Do you go to a GP or a hospital clinic?

When I saw my latest diabetic nurse, after keeping my diary for a week we noticed I was often having nightime hypos and morning hypos. We started reducing my lantus by a couple units, I would rerecord my diary for the next two weeks then we would meet up again and look at the changes to hypo rate and see if it needed to be brought down again. My basal has been completely stable since I found the dose I needed in December and only my bolus needs adjusting. I am on injections though and have no idea how a pump works so I am not sure if your basals changing is normal or not- sorry!
Click to expand...

I can relate to that! Third year of Uni was a nightmare as I was stressed so much! It seems like the level of care can change so much in different locations! This is my hospital clinic, given they are starting to help a lot more the last week but it has taken years for me to get help and i'm slowly losing my mind! Haha. Thank you for the reply it's helpful to know that once it's worked out it hopefully will stay the same!
 
Emily2369 said:
Hi, I have had diabetes since I was 9 and have been battling with the same problem for years! I am now 25 and only just getting back on the normal scale of Hba1c readings..well the most normal I've been since being diagnosed..after years of nurses etc telling me I was an adolescent diabetic and practically gave up on me ( I can own up to a point I wasn't looking after myself) there is a few reasons to that..but any way after years of being told I am killing myself due to poor control, and doing Dafne twice..I've come to realise it is only you that can make a change..I have discovered that about a week or 2 before my period my readings will go higher and I have to adjust doses accordingly, also I get dawn phenominon, which is when you wake up in the morning your body shoots out glucose..every morning from 6am-8am I have to get up and give a correction dose of 2-3 units which does the trick..it sounds like you may have a touch of both...when do you notice that your sugars are high? is it morning afternoon or evening?
Click to expand...

It's so difficult to get to the normal scale of Hba1c though so I completely understand! I'm finding that my sugars are high after my evening meal at the minute. Saying that though, I am currently having a hype (two hours after my evening meal) which is very strange! This week is my time of the month though and as suspected that could be playing a part in why I can't figure out what's going on! Maybe like you mine go high before and I need to figure it out to change my doses for this!

At the minute i'm struggling in the morning as it's the complete opposite! My levels are dropping between 4/6 and 10 in the morning by a lot. I have reduced my insulin for the past three nights and it's still happening so i'm hoping tonight I will see a change after dropping it again! Thanks! :)
 
donnellysdogs said:
Totally agree... I don't have monthlys as such due to hysterectomy but certainly being a person that experiences DP and a hubby that works shifts etc... Then there will be times when you need a different profile.

I use a different profile for hubbies AM or PM shifts or lie ins. I've tested regularly for these during the night as these are the biggest times of changes with me.

You do have to esrablish the timeswhenyour body needs a different basal profile...I suspect it is your nights more than anything that are giving you problems.

Then you need to do a basal test for evening time...

Or at least, thats what I would do.

Don't get fed up with pump changes... It is more work than MDI perhaps.. But you can get better results. Time spent initially will be rewarded later...

Just can you answer if you had a 5am rise 2 hours after a 3am good reading what basal rate(s) would you change for that?
Click to expand...

Thank you! This is what i'm hoping! I don't want to give up as I wanted one for so long but so far i'm having no joy.

I've been told that if you're levels or high or low then your basel needs changing two hours before that. So if they're rising between 5 and 7 for example, you would need to change your basel between 3 and 5. BUT this is something I am still figuring out. I'm not sure if it's working or not, I wouldn't want to say how it works for definite. I am waiting to ask my nurse tomorrow about this! I am currently finding i'm going low between 4/5am and 9am so i've changed my basel from 3 am to 9am. So far i've had no luck! What would you suggest for this problem?
 
Ali H said:
What sort of foods are you eating and how many carbs per meal? Do you weigh foods and use my fitness pal or similar to help you count the carbs?

Ali
Click to expand...

On average I have about 30g with breakfast, 50-60g with lunch and 40-80g with dinner. A lot of bread, pasta, rice etc. I realise this is probably a lot, however I weigh and count everything. I'd say i'm the most confident with counting what carbs I eat, just very unconfident with how to process this into what to bolus with ratios. I am completely lost with multi-waves and extended boluses! My biggest problem is figuring out my basel rates, which I will hopefully figure out with testing over the next week or so!
 
Timing of basal changes are specific to individuals.... If I am low at 4pm say, and I last tested at 2pm and was okay. Then I would be changing my 1pm dose.
The reason being...
1) you cannot be sure that low hit you at 4pm, the only thing you can say without a CGM is that it occurred sometime between 2and 4pm.
2) on a pump the insulin is fed into you over an hour, so that whole hours dose is not going to be in you and fully working for possibly up to two hours after that last spurt of hourly insulin went into you. So that could be up to 3 hours. So I always base my changes as being 3 hours. If I tested and was low (or high) at 3.30pm I would still change the 1pm dose.

Initially I was told to change 3 hours and 2 hours before a fluctuation in my readings.... Then I was told 2 hours before.... But for me it is actually 3 hours.

Don't forget that you want to stop your levels lowering and that start time of lowering is not determinable unless you have a CGM.

That is why bolus for meals is counted as fluctuating between 2-3 hours after the bolus is given because nobody can guarantee specifically what time those peak changes will occur.
 
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